I'm going to be blacklisted from Blogger, if I keep this up. ;)
But, here's the latest - I just didn't have much else to add, so I thought I'd copy an email I recently sent out to some bracing/casting moms I know.
Dr. K is an advocate for the Providence (nighttime bending) brace. We've talked, at length, to several orthotists and our local surgeon who says, "We aren't naive enough to think that we know what kind of brace is the best for all curves. We're just now doing a global study that follows all kinds of scoliosis and all kinds of curves to see which works for what type. So, if you want to do providence, we're fine with that."
Okay, good. BUT - I can't find a darn orthotist who agrees. Dr. K says he will no longer do long-distance bracing because it
requires too much adjusting (we're about 8 hours away). I agree. It makes sense.
So, I called our local Shriners and they only do Bostons, which I definitely don't want because of the rib compression (it
wrecked his developing ribs at 10 months) and because it's a 23 hour a day brace. I have read that the bones can become compromised (deteriorate) and make them less stable for future potential surgeries. They (at Shriners) claim that the spine has to be load-bearing to correct and would not waver from that perspective. Obviously, they don't deal with much infantile scoliosis (based on our own experiences there).
I contacted the Providence manufacturer (spine tech?) and they gave me the names of two orthotists - K, who is local to us, and B, who is about 4 hours from here. K called us back first. He has made providence braces before, but the youngest child was 6. He doesn't do them very often, but seemed willing to try with Jack. However, the Providence people said that B was, by far, more experienced with them. And, Dr. K always says that a brace is only as good as the person who makes it. So, we wanted experienced.
After over a month of phone tag with B (hopefully not indicative of the quality and responsiveness as a health care provider) he called this morning. He, apparently, thinks that providence are "okay" and has used them on kids as young as four - but he really uses his own hybrid brace for most kids. He said it's based on the callibus(?) and he's designed it for use on infantile scoliosis. He uses it for single thoracic curves and has braced curves into the 50s. He said they resolve in the brace or at very least get better. His 50° patient now has a 20° curve just using this brace (but we all know it could very well be a resolving form of infantile scoliosis). He says it's designed for as much use as we need it - either all day or only all night. He also claims it's adjustable for growth, so it should last up to two years whereas, he claims, "you'd be lucky to get a year on a providence at that age." (Keeping in mind our insurance coverage is crap and we will likely pay out of pocket for a huge majority of this one, plus any subsequent braces in the next three years).
He said he is calling Spinal Tech (the providence company) to see if they know of anyone who has used providence on a child as young as two. (If I had spoken with him, I could have given HIM a few names, but I digress.) He said its probably rare because its hard to get a child that small to fit into the device with success. (and we know that in the realm of progressive infantile
scoliosis, it has been used successfully. I specifically asked Dr. K about the Mehta kids over the years that did not totally
resolve in casting. He said they are ALL maintaining their correction - and considering how many IS patients he's had, I trust him before this orthotist, you know?)
Anyway - any thoughts or ideas? Input? (Comments are disabled here, so you have to know my email) :)
Sometimes I hate being in the decision making position.
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